Presentation at the PHDSC 2012 Annual Business Meeting

The Learning Health System and the Learning Health

CommunityJoshua C. Rubin, JD, MBA, MPH, MPP

Executive DirectorJoseph H. Kanter Family Foundation

Thursday, November 8, 20121

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Preliminary Acknowledgement• Some portions of this

presentation were adapted from the Learning Health System Summit: Background Briefing Slides prepared by Charles P. Friedman, PhD for the Joseph H. Kanter Family Foundation (KFF) in April, 2012.

• KFF is grateful to Dr. Friedman for his pro bono service as Chair of the Planning Committee.

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Public Health

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PHDSC Strategic Plan 2012-2014: Towards Public Health Sector

Transformation and Unity“PHDSC envisions a transformation in the United States over the next 10 to 15 years, from today’s disease‐based model to a health‐based model of care (HBM) committed to continuous learning from data generated in the course of practice, i.e. an integrated Learning Health System (LHS). PHDSC’s vision is shared by a number of prestigious organizations, including the National Committee on Vital and Health Statistics (NCVHS) and the Institute of Medicine (IOM).”

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Standards and Harmonization: “Who’s Yehoodi?”

Crisis

“Music creates order out of chaos: for rhythm imposes unanimity upon the divergent, melody imposes continuity upon the disjointed, and harmony imposes compatibility upon the incongruous.”

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“In My Experience…”

“It is impossible for me as a physician to deliver good care (and neither can any other physician)... It is impossible for me to provide the information that patients want when they come to see me. It’s absolutely impossible, even though I’d like to do it, as would virtually all physicians. It is also impossible for patients to make good decisions about their care without this kind of information.”

-- Robert Brook, MD, ScD, RAND Health and UCLA

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Our Healthcare System is Insane…

One definition of insanity is doing the same thing over and over again and expecting different results

(TopPun)

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How Health Information Technology (IT) Fits in…

Health IT as a key to unlocking the collective power of individuals:• To improve health• To save lives• To advance patient safety• To protect the public’s health• To revolutionize biomedical research• To redefine our patient experience• To transform our healthcare system

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We are the Key to the Cure: Two of the Least Well Utilized Resources in Healthcare

Patients and Caregivers Ourselves (NOTE: Everyone will be a Patient)

“Let Patients Help!”

Lessons Learnable from Our Collective Health Experiences

“Sharing Saves Lives!”

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Joe Kanter’s Big Idea…

“For an idea that does not at first seem insane, there is no hope.”

-- Albert Einstein

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A National-Scale Learning Health System (LHS): Some Background

A Learning Health System will Make These Things Possible

“17 years to 17 months, or maybe 17 weeks or even 17 hours…”• Nationwide post-market surveillance of a new drug

quickly reveals that personalized dosage algorithms require modification. A modified decision support rule is created and is implemented in EHR systems.

• During an epidemic, new cases reported directly from EHRs. As the disease spreads into new areas, clinicians are alerted.

• A patient faces a difficult medical decision. She bases that decision on the experiences of other patients like her. 12

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A Learning Health System for the Nation

Pharmaceutical Firm

Beacon Community

IntegratedDelivery System

Community Practice

Health Information Organization

Health CenterNetwork

FederalAgencies

State Public Health

GovernancePatient EngagementTrustAnalysisDissemination

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The National-Scale LHS: One Reusable Infrastructure that Supports

• Research– Clinical– Comparative effectiveness– Translational

• Public Health– Surveillance– Situational awareness– Interventions

• Quality Improvement– Health process and outcomes research– Best practice dissemination

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Our (Collaborative, Self-Organizing, Bottom-Up, “Chaordic”) Approach to Realizing a National-Scale LHS

15“Let’s all work together to give the gift of health to our children and our nation.” – Joe Kanter

Planning Committee Learning Health Community

Planning Committee Members• Kate Berry, National eHealth Collaborative (Joined 8/31/2012)• David Blumenthal, Partners HealthCare• Harry Cayton, Council for Healthcare Regulatory Excellence UK (Joined 5/21/2012)• Charles Friedman, University of Michigan (Chair)• Claudia Grossmann, Institute of Medicine• Robert Kolodner, Open Health Tools• Rebecca Kush, Clinical Data Interchange Standards Consortium• Kevin Larsen, Office of the National Coordinator for Health IT (Joined 7/18/2012)• Allen Lichter, American Society for Clinical Oncology• Janet Marchibroda, Bipartisan Policy Center• Michael McGinnis, Institute of Medicine• Rachel Nelson, Office of the National Coordinator for Health IT (Joined 7/18/2012)• Marc Overhage, Siemens Healthcare• Frank Rockhold, GlaxoSmithKline• Joshua Rubin, Joseph H. Kanter Family Foundation• Jonathan Silverstein, NorthShore University HealthSystem• Richard Tannen, University of Pennsylvania• James Walker, Geisinger Health System• Joseph Kanter, Joseph H. Kanter Family Foundation, Ex Officio

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Stakeholder Groups at the May, 2012 LHS Summit (80+

Participants)In No Particular Order…• Academic Health Centers and Care Provider Networks• Advocacy and Patient/Consumer Organizations• EHR and Health IT Vendors• Government Agencies• Payer Organizations• Pharmaceutical Industry• Philanthropic Organizations• Professional Associations• Research Initiatives and Organizations

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LHS Core Values1. Person-Focused2. Privacy3. Inclusiveness4. Transparency5. Accessibility6. Adaptability7. Governance8. Cooperative and Participatory Leadership9. Scientific Integrity10.Value

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Endorsements of the LHS Core Values* (Early Adopters…)

Lewin and Associates LLC

2012

The Center for Learning Health Care

Siemens Health Services

GE Healthcare IT

*To be included on a Learning Health Community public website that will list all organizations that have endorsed the LHS Core Values

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Some Links of Interest• http://kanterhealth.org/featured/2012-su

mmit/

• http://healthinformatics.umich.edu/initiatives/lhs/national-summit

• http://reginaholliday.blogspot.com/2012/05/word-of-day-is.html

• http://www.phdsc.org

ContactsJoshua C. Rubin, JD, MBA, MPH, MPPExecutive DirectorJoseph H. Kanter Family FoundationE-mail – Josh@JoshCRubin.com

Charles P. Friedman, PhDProfessor and Director of Health InformaticsSchools of Information and Public HealthUniversity of MichiganE-mail – cpfried@umich.edu

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Our Shared Health Legacy: “Together We Will!”

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

-- Margaret Mead

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Thank You!Questions and Discussion…